When most of us think about patient empowerment, we think about choosing a health care provider or researching treatment options. But Dana Lewis took patient empowerment to a whole new level in 2013, when she set out to find a solution for a small problem: the alarm on her insulin monitor wasn’t waking her up at night to alert her of severely low blood sugars.
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Initially, she brought her concerns directly to the industry, but to her dismay they responded with comments like, “It’s loud enough” and “Most people wake up to it.” Fortunately for her, and for many others around the globe who are struggling to manage diabetes, she didn’t accept those answers.
I first met Dana while attending a Meetup on Health Care Design in Seattle. She was a panelist who shared her personal journey–specifically, how she co-created the DIY Artifical Pancreas System when no one was able to deliver one. As I listened to her story, I remember thinking to myself this is the most powerful example of self-care I’ve ever heard!
How exactly did she do it?
She reached out to other smart people who had the answers she needed, and with a “design and build” mindset, they promptly got to work. And after months of testing and tweaking, the OpenAPS solution was born.
The cost? About $150 USD on average.
As you might imagine there are a few risks involved with building Do-It-Yourself medical devices. There’s no FDA stamp of approval, no experts standing by to make updates or repairs, and device failures could result in complications. Still, it’s easy to see why the idea is so compelling: often, the alternative isn’t much better. For example, not awakening to a low blood sugar alarm can be fatal. Suffice it to say that managing complex medical conditions like diabetes is anything but easy, even with today’s modern technology.
Lewis admits this project has been “a gradual awakening,” or a process, rather than something she simply decided to do. It certainly didn’t go from idea to reality overnight.
“It was a realization that we don’t have to be passive recipients of care as patients.”
Indeed, we are the owners of our health just as much as we are recipients of care.
Her mantra, we’re not waiting, tells the story quite clearly. And she certainly isn’t waiting. Neither are the more than 200 others around the globe who are now using a DIYOpenAPS system to not only manage their chronic condition, but also to improve their quality of life.
For Dana, self-care involves getting enough sleep, spending time with family, and reading. Like so many of us, she understands that when she doesn’t get what she needs, it impacts everything else.
Empowerment lies at the heart of self-care. It’s taking ownership of what we need and then experimenting until we get it right.
Design thinking can be applied to an endless number of life’s challenges. If you’re feeling particularly empowered by this story, you can learn more about the Open Loop Artificial Pancreas System by contacting Dana directly or exploring these links:
@danamlewis #werenotwaiting #DIYPS #OpenAPS
Background and details on how Dana built her OpenAPS: https://diyps.org/2016/05/12/how-i-designed-a-diy-closed-loop-artificial-pancreas/
Why DIY-ing #OpenAPS is important: https://diyps.org/2015/03/31/why-the-diy-part-of-openaps-is-important/
Please Note: The Artificial Pancreas System, like other DIY devices, is not FDA approved, which means individuals assume any and all risks associated with its use. Please talk with your doctor before undertaking a DIY project like this, and be sure to keep them informed of your progress.
Other Exciting News: This hybrid closed loop technology is the future of treatment for diabetes, and several versions of it are currently in the commercial development pipeline. It’s expected that an FDA approved product will be be available in 2017.